Tuesday, December 3, 2013

That's Almost Done…What's Next???

Ok. Now that the ramp is almost complete (we still need to build the roof, add new gutters, install railing, and stain it), what do we need to do next?!?!

Well, we have a few GIANT holes in our fence which makes our home a tad to visible for our taste. That should be our next big to do we need to check off our list. We can all agree with that decision.

But wait, you're forgetting that Rae is getting heavier and your back isn't getting younger so you may want to consider throwing all your financial efforts into getting that wheelchair accessible van. It doesn't have to be new (to the tune of $45K to $65K.). A used one with low mileage would be fine ($20K might get you a 2004). Besides you're only going to need one temporarily…four maybe five years tops because honey that girl is going to walk! Very true, I guess that's the next thing we should tackle.

*Tsk, Tsk, Tsk*

Has it totally slipped your mind that you have a teeny tiny bathroom door that is becoming harder to maneuver her (over 3 ft body) through after bath time, not to mention the strain on your back hefting her in and out of the tub when she's all slippery? Seriously, you guys need to work on your bathroom (which means removing the current walk-in closet, building a new non-walk-in closet, relocating the door, and replacing the flooring…carpet or hardwood/laminate???) and get it ready because unlike the (hopeful) brief use you'll get out of the van, the bathroom is a forever solution and if done properly will add some value to your home. It would be a relief to have this one off your plate.

You have lost your mind! She needs a proper bed! Are you daft woman?!? The girl can't sleep in a crib forever and it would be so much easier to change her diaper and get her ready for school if you could sit on the bed while doing so. Don't forget the added bonus of being able to lay down with her when she is having a rough night which happens quite often. This is the obvious choice…DUH!

Not so fast...

What about the living room? When are you going to tackle the seating issues in there? Do you want to build a raised platform or buy her a recliner? She can't just sit on the floor forever you know! Of course she can't, but you're forgetting that you are trying to acquire a stander and that will give you another way to position her in the living room and when she isn't in her equipment she can sit on the couch. But she likes to lay on the floor! She doesn't always want to sit up so it would make more sense to build a platform. It would be so much easier to pick her up. Ok…decision made.

Did your brain go on vacation?!? What about the Tobii?? Hello!!! You already started working on that and it is going to take some serious moolah to make happen. Don't you want to give Rae a chance to learn how to tell you that her tummy hurts or that she's hungry? Surely you want her to be able to say, "I love you." Giving her a way to communicate with the world, shouldn't that be your primary focus? Alright, we're going to focus our efforts on obtaining a Tobii for Rae.

You need to simmer down now…

We're still waiting to hear from Boston about that clinical trial which would REQUIRE you to travel to Boston. Maybe waiting to hear from them before making any decision would be best. Don't forget about the Natural History Study that you said you would like to participate in is in it's final year and those trips are going to cost some bucks too.

Hello, McFly?!? What about being prepared for a rainy day? Isn't that something you should be concerned with too? You have plenty of rainy days as it is and you know that probably isn't going to get any better so you might want to try to squirrel away some cash for an emergency.


I am losing my mind! Everyday these various projects plaque me to no end. What's worse is that these are just some of the bigger ones! I have dozens of little ones that nip at my heals as well and it is enough to drive anyone mad (both the lunatic and Hulk versions, "Candi SMASH!!!"). By the way, my name is Candice. I'm done writing under another name. Most of you know who I am and some of my newer friends get a bit confused by my pseudonym.

I can't seem to get a grip on where to focus my efforts next. Technically, I don't NEED to make this decision right now, but having some sort of "plan" makes me feel more secure. On the flip side, I have also learned the very cruel lesson that having a "plan" doesn't mean it will unfold the way you'd like. I fancy myself a contortionist. But, in actuality, I'm not as flexible as I'd like people to believe and what little flexibility I have left is quickly turning into something akin to crippling arthritis. I am becoming frozen. Afraid to leap (more like take a baby step). Terrified of making the wrong decision and using the finite resources we have at our disposal in on the wrong "to-do."

This makes living in my own headspace very cramped. As much as I believe I don't want to cross a bridge when we get to it…I just can't. I keep mulling these "to-do's" around over and over to the point I can't really enjoy the goals and objectives we've already conquered. I'm already thinking about the next item on the agenda and how to make it happen. It's a very frustrating way to live. I can't keep this mental monster in check at all times, but I try.


  1. Holy Lord in Heaven, Candice! I got a panic attack just reading all of that. But you know what? You are a strong woman and mother, and I believe in you! You will achieve all of this and more because that's who you are! You are to-do person and slowly, but surely you will make all of this and more happen! Did I mention I believe in you? Love you, Tricia and Keti

  2. I'm laughing and at the same time thanking fate/God/whatever that I'm not in your shoes at this point.

    1. I'm glad I could make you laugh and thankful you aren't in the same boat. I checked your blog and you have your own battles to fight. Keep writing and thanks for reading!

  3. Ha!! I'm laughing but only because it is so similar to our list!! Ceiling hoists, through floor lifts, access to the garden which is 4 ft below our back door.... Widening the said back door so future, bigger wheelchairs can fit through, organising said future bigger chair as she has already grown out of current one, but should probably wait for rigid brace to be fitted as all her seating will then need to be reviewed... And don't even get me started on the bathroom!!! And that is just moving and handling issues! Everything overlaps and has an implication on everything else- there is no obvious starting point to this list!! Much love xx

    1. Since everything overlaps it makes it that much harder to determine what the next "to do" should be. I call it the domino effect. We knock one down with the knowledge that it will lead us to the next domino. I would like to think that there would be an end to the BIG items on the list, but every time one goes down another one pops up. All in due time...